Portal de Periódicos da CAPES

Patience with patients

2007; Elsevier BV; Volume: 370; Linguagem: Inglês

10.1016/s0140-6736(07)61821-2

1474-547X

Ann T. Chu,

Primary Care and Health Outcomes

May opened her eyes, blinking in the harsh light. Why is it so bright, she wondered. Her eyes took a few moments to adjust as a grey, impersonal ceiling came into view. The white tiles seemed to be covered in a thin layer of static dust, noticed by no one. May stared, as if expecting to see the sky and clouds above. Why do I feel so tired? May's body felt somewhat stiff, a feeling she had become increasingly accustomed to as the years had passed by. Getting older was no easy task, everything took twice as long in the morning but thank goodness she was still independent yet. Her husband Stan had died of a heart attack 5 years ago. Of course, she had mourned for his sudden passing but they had led a happy life together. May and Stan had both thought that a long, painful demise would be much worse, not only for themselves but each other if they had to be cared for, a burden borne out of love and duty. A telephone rang, not too far away. The shrill, demanding noise startled May and she furrowed her forehead, trying to work out where it was coming from. It was certainly not hers—her grandson had once tried to persuade her to carry a mobile telephone but May couldn't put up with the thing: how were you supposed to get a minute's peace and quiet when everyone kept phoning to “see how you are getting on”? Not that May minded having people care for her, she would just rather they visit from time to time instead of thinking that a brief phone call relieved them of that particular duty. The ringing stopped abruptly, someone had picked it up. May felt the sense of irritation ebb as quickly as it had come. May paused, a sudden wave of panic coming over her, the unfamiliar ceiling and sound of a woman talking on the telephone telling her that all was not quite right. Where am I? May tried to sit up but it was all too much of an effort and she sank back into her bed. Turning her head, she saw the light blue curtains hanging from a ceiling rail and a small cabinet beside her bed. May had seen the regulation furniture in hospitals often enough to realise that for some reason she was in one. What's happened to me? May wracked her brains. Oh yes, she had been walking in the park. It had been a lovely spring morning, the sun was out and it felt warm for the time of year, despite a fresh wind that made her walk that little bit faster. May liked keeping active and ever since she'd retired, her daily walk around the park had become something of an enjoyable routine. It took longer now than it would have some years ago, but the feeling of freedom and open air put a little spring in her step. May loved it best in the autumn and winter. She wrapped up warm and crunched through the autumn leaves or the winter snow, undisturbed by the noisy schoolchildren or young sunseekers who frequented the parks in summer. “Do we have a name yet for our lady in bed 7?” “Working on it,” a bored female voice answered, “Who these days goes out without a penny on them, not even a bus pass to identify them? Has she woken up yet?” Poor woman, thought May, it must be horrible to be a Jane Doe—nobody knowing who you are or where you've come from. I'm sure she'll be able to tell them when she wakes up though…May's thoughts returned to herself. I don't remember anything beyond walking in the park, I must have had an accident; perhaps I should call the nurse. May reached out with her right hand, there was sure to be a patient's buzzer on the cabinet. She turned her head, the buzzer was there but her hand was not. Confused, May reached out again but her arm did not move. What on earth…no way, this is not happening. I'm just being a bit slow off the mark today. May whimpered as she lifted her arm off the covers but, overcome by the weight, it dropped back like a lead balloon. Her eyes widened in horror—how did I become paralysed? OK, calm down. May moved her left hand. It moved. She shuffled her legs. She couldn't be sure, but it seemed like they could move too. It was just her right arm, maybe she had broken it and that was why she was in hospital. May breathed a sigh of relief, no need to panic, she thought to herself. “I think she's awake now. Go and take a history, come back in 5 minutes.” A male voice. A consultant giving an order to his junior, no doubt. A young girl popped her head around the curtain. “Hello,” she said cheerily, “I'm Lizzy, one of the medical students. Is it OK to have a chat?” May smiled, after all she didn't have much choice. A concerned look came over Lizzy's young, unlined face. “Sorry, it's just that if I do it first I can tell the other doctors all about you.” May nodded, she knew she'd have to do it all over again, several times over, but how else were you supposed to learn? “Right,” said Lizzy, taking out her notebook and pen, “Let's start with your name.” May. May Sparling. “May…Sharling. That's a nice name,” Lizzy beamed, eager to please. No, Sparling. “Yep, that's fine, Mrs Sharling. Now, how old are you?” 72. May struggled with the words but it was an easy enough question. “Ooh, 72. My gran's 72. She's ever so active though, always out and about. She always says you're as young as you feel! Now, how have you ended up in hospital?” May shrugged her shoulders; I don't really know. Lizzy chewed her bottom lip. How were you supposed to take a decent history if the patient wasn't going to talk to you? “Well, how did you get here?” May shook her head. I don't know, she said. Lizzy paused. “Ok, well, do you have any medical conditions?” May nodded her head: Em, she said. Lizzy looked at her doubtfully “Do you know what it's called?” Em. En. May felt frustrated. Why couldn't she just say it? She'd used it many times before. Em… “OK, well if you don't know the name of it, how about medication?” May smiled ruefully, but she didn't think she was doing it right. “Allergies?” Just wait a minute and I'll be able to tell you—Emm… “Mrs Sharling? Any allergies?” May shook her head, cross with herself for not getting the words out in time. “Do you have any family?” Two, May said. “Two…brothers? Sisters? Children?” Yes. “Erm. Two brothers and sisters or two children?” Lizzy looked confused. Two, said May, nodding. “Never mind, do you live alone, in a flat or in a house?” Yes, alone. Lizzy sighed. “Do you live in a flat?” Yes. “Not a house?” Yes. No, a flat. May gestured with her hand. Lizzy glanced up at May from her notebook. “Right,” she said, “I'm sorry I'll just go and get one of the doctors. I'll be back in a minute”. No…wait, but she had gone. May lay back in her bed, exhausted by the conversation. MND, motor neurone disease. It had been diagnosed 6 months ago, and the rapid onset of speech and swallowing problems alarmed her greatly. The doctors had said there was a poor prognosis but it was facing people who watched her struggle with her words, then turned away, assuming that she was not in her right mind, that frustrated her the most. Lizzy was only young, it was hard at that age to comprehend what growing old would be like, let alone with a progressive disease. When you were young, of sound mind, body, and spirit, you thought you were immortal. May had done it herself as she flew up the career path, pitying others but never really imagining it would happen to her. “Lunch time!” One of the domestics appeared with a trolley and started to hand out trays with warmed-up food to other patients in the bay. May's curtains were drawn round the sides so she couldn't see her neighbours, but opposite her was an empty space. “She's gone for a scan,” another patient pointed out to the serving lady. “Thank you, Doris, I'm glad you can be my eyes and ears here,” the other woman laughed. “Now, you're new here. I've just got you the standard meal, let me know if you want something else, okay dear?” Well, actually…But the woman had already moved on. May eyed the plate of meat and two veg and the cutlery provided. She couldn't eat that. Not that she didn't want to, she physically wouldn't be able to. The first challenge would be to cut everything into tiny pieces. May used a blender at home and that was with the full use of both arms. Her right arm now felt weak and heavy, not unexpected in her condition, but alarming nonetheless. The second would be to swallow it. For several months, May had been able to swallow small spoonfuls of food if it had been puréed, but the last 2 weeks had proved so difficult she had resorted to sucking her roast dinner through a straw. May was glad that she had insisted on staying in her little flat. Her two sons had offered to make room for her in their own homes but May had flatly declined; they had their own families, careers, lives. Besides that, there was no way she wanted her grandchildren to see their Nanny eating like a baby, sometimes even throwing a temper tantrum with the frustration of it all. Nurse! May called out but there was no response. Nurse! “Use your buzzer, dear,” Doris's voice came from the other side of the curtain. There was a pause before a head appeared around the curtain. A lady, who looked in her sixties, came up to the end of May's bed. May was trying to reach for the buzzer with her left hand, but it was slightly out of reach. “Here, let me get it for you. So what are you in here for then? The doctors have been in a bit of a flap, trying to find out who you are. You haven't touched your dinner, don't leave it too long. It's hardly bearable when it's hot, never mind when it's cold. Here, you want a nurse don't you? I think that's what you said. I'll press the buzzer for you. There you are then. What's your name?” May. “Well, hello May. I'm Doris. Hospitals are so dreary, aren't they? But I've got to know everyone here, anything you need just let me know!” May smiled but she knew that Doris would not be able to see it. “Well, look, the nurse is here. I'll let you get on with it then.” “Right,” said the young nurse “How are you doing, Mrs Sharling? We're still looking for your medical records, you had us worried a bit there. Do you know where you are?” May contemplated the answer. She knew she was in hospital, her local one she presumed, but as for the ward or why she was here, no. May looked at the nurse, deciding against trying to explain it all and shook her head. “Well, seems like you might have collapsed in the park. A man walking his dog found you, but the doctors will be along to explain things to you, OK?” May blinked at her, apart from her arm that had suddenly got worse, she couldn't think of anything else they would want to tell her. “Meanwhile, you eat up your lunch. We can't have you wasting away now can we?” With that, she left the bay. Hold on…May called out to her but she was out of earshot. May looked at her food again. Suddenly, she wasn't that hungry any more. She didn't remember fainting or falling. It must have all happened suddenly. And what was that about her medical records? Besides, they were probably looking under the wrong name now. If only she had a pen and some paper, she could spell her name out more clearly. She wasn't sure if she could hold a pen properly in her right hand today, it felt like it might be a struggle. Writing with her left hand would be slow and probably messy, but it would be a start. May looked round, but there was nothing to hand. “Mrs Sharling! Glad to see you're awake, not eating your lunch I see? It's not so bad, we don't want you wasting away now, do we?” A young man appeared, stethoscope slung round his neck, wearing a badge that said ‘Dr. J. Potter, Specialist Registrar’. “Now, one of our medical students got a brief run-down from you. We've done a few tests, we thought you might have had a stroke, but there was nothing obvious on the scan. Anything you can help us with?” Pay…May tried to say the word ‘paper’ with difficulty. “Pay…? Hmm…Do you have high blood pressure, diabetes, heart problems, anything like that?” Pen… “Any medication?” Pen, please…May tried to gesture writing with her left hand. “Do you understand my questions, Mrs Sharling?” May nodded her head. Pen, please…A beeping sound distracted Dr Potter. “OK, Mrs Sharling, I have to take this but we'll carry on a bit later, OK?” May had no choice, he was gone. The domestic came bustling back in, taking the other patients' food trays. “You haven't touched your food, deary. Maybe a bit later, eh? I'll keep it in the kitchen for you. Just let the nurses know when you want it, I can warm it up for you.” May closed her eyes. She didn't feel much like eating now anyhow. She hoped her boys would be here soon, then they could explain everything. She was too tired. As May fell asleep, she pondered how other patients felt as they woke up in the strange environment of a hospital. She had never imagined that you could feel so scared and alone, when you were surrounded by hundreds of people. After all, hospitals should feel like second nature. I just need some pen and paper, May thought, then I could write down my name: Dr May Sparling, Consultant Neurologist (retired).